Spinal Muscular Atrophy

Seema Kennedy Excerpts

Thursday 25th July 2019 Commons Chamber

[The Parliamentary Under-Secretary of State for Health and Social Care (Seema Kennedy)]

What a pleasure it is to speak in the final parliamentary debate of what has been an historic and tumultuous term for all of us.

I congratulate my right hon. Friend the Member for South Holland and The Deepings (Sir John Hayes) on securing the debate on such a timely day, because we have had news on Spinraza in the last 24 hours. He outlined very movingly the symptoms of spinal muscular atrophy, which has been raised before in this House. The hon. Members for Bristol East (Kerry McCarthy), for York Central (Rachael Maskell) and for North Tyneside (Mary Glindon) are particular champions for sufferers.

SMA is a terrible disease that can have a terrible impact on the children who suffer from it, their families and the wider community. We in the Department know how important it is for them to be able to access effective treatment. It is a rare disease. It affects about 100 babies born each year. It is estimated that it affects between 1,200 and 2,500 children and adults in the UK. Until recently, there were no licensed treatments for it, so the condition has been managed using nutritional support, physiotherapy and social care.

Spinraza, as my right hon. Friend outlined, has been licensed across Europe for the treatment of SMA since 2017 and is very effective. However, it is extremely expensive and has been undergoing assessment by NICE to determine whether it would be an effective use of NHS resources. I say to him that QALYs do take account of wider costs—not just physical costs but social care costs. As far as I am aware, there is currently no difference in the quantitative evidence. He gave the examples of a man in his mid years—at 60—and a child.

I will go on to talk more broadly about the NICE process, but I am really pleased that only yesterday, NICE published its final guidance, meaning that this debate is very timely. The guidance recommends the use of Spinraza for many patients with SMA through a managed access agreement, which has been negotiated between NICE, NHS England and the manufacturer, Biogen. This makes Spinraza available to the NHS at a discounted price. Importantly, it also sets out arrangements for collecting evidence on the long-term impact of Spinraza, because at the moment the evidence is quite immature. The managed access agreement is one of the most comprehensive deals in the entire world and it brings Spinraza to one of the widest cohorts of eligible patients in any country. It was signed and supported by Spinal Muscular Atrophy UK, Muscular Dystrophy UK and TreatSMA. I put on the record my thanks and my tribute to all those organisations for the support they have given patients and families with the illness. That very welcome development has involved hard work and flexibility from all parties to reach this point; if only all parties in all the debates I have to speak in on this matter were as flexible.

[Sir John Hayes]

The Minister makes a good point about the managed access agreement and the amendments to it that she described. But the real issue here is whether Spinraza would benefit every single sufferer. If it would, it should be universally available.

[Seema Kennedy]

I know that there is an issue with some people suffering from SMA type 3, but I am not the person who would make the decision on whether Spinraza was effective or not; that is why NICE is there.

Children with the most severe form of SMA type 1 are already benefiting from treatment with Spinraza. Following yesterday’s announcement, eligible patients with types 2 and 3 will begin treatment as soon as possible within the next three months.

NICE has concluded that there is not sufficient evidence at this stage for the managed access agreement to cover some patients with SMA type 3 or any patients with type 4; that is why we are still carrying on collecting evidence. I realise how dreadfully painful that is for those not able to access Spinraza. The majority of patients will be eligible under the managed access agreement.

The parties to the agreement have agreed to keep the eligibility criteria for treatment under review during the five-year term of the agreement, so those criteria may be further extended in future if more evidence of benefit emerges over time. NHS England and I have acknowledged that the inclusion criteria associated with the managed access agreement could have been more clearly communicated when it was announced.

I turn to the NICE process altogether. This is an important system. It makes independent, authoritative, evidence-based decisions, which is essential so that taxpayers can be assured that the price we pay for new medicines reflects the value that they bring. It also helps ensure rapid access to effective new treatments for NHS patients. It has been going for 20 years and is internationally respected. There are both established and new pharmaceutical companies developing medicines for rare diseases, which takes an awfully long time, based here in the UK, and medicines can be brought to the market through the NHS very quickly. The Department is keen to press on with that.

We have a UK rare diseases strategy, which was set out in the NHS long-term plan. Genomics is a particularly important area, in which we want to innovate so that we have more comprehensive and precise diagnoses and allow patients to access the right drugs. We are committed to that. The NICE process has recommended more than 80% of the medicines appraised and 75% of medicines for rare diseases for some or all of the eligible patient population, but of course the processes must evolve. They have to keep going, taking into consideration developments in science, healthcare and the life sciences sector. That is why NICE keeps its methods and processes updated through periodic review, which includes extensive engagement with stakeholders, including patient representatives, drug manufacturers and clinicians.

[Mary Glindon]

Has the Department given any consideration to the MAP BioPharma report released earlier this year, which looked at how the appraisal process could make a fairer playing field for rare diseases?

[Seema Kennedy]

Yes, the Department has looked at that report. NICE recently initiated a review, and I assure Members—as I did when I answered the urgent question on Tuesday—that it will be wide-ranging and carried out with extensive engagement with stakeholders. I shall be keeping a close eye on it if I remain in this job—and even if I do not.

This has been an important debate. I thank my right hon. Friend the Member for South Holland and The Deepings, who always speaks so passionately on behalf of people who are sick and on behalf of the most vulnerable—those children who have no voice for themselves. I reassure Members that access to effective new treatments will always be a priority for the Government.

I thank you, Madam Deputy Speaker, for your service to us in the Chair, and wish all right hon. and hon. Members and all who work here in the Palace of Westminster a very revivifying recess.

Question put and agreed to.

Oral Answers to Questions

Seema Kennedy Excerpts

Tuesday 23rd July 2019 Commons Chamber

[The Parliamentary Under-Secretary of State for Health and Social Care (Seema Kennedy)]

We want patients living with cystic fibrosis to get the best care possible. Progress in specialised treatment for patients with CF means that people are living healthier and longer lives, but I recognise that it is frustrating for everyone, in particular patients and their families, that a deal on Orkambi has not been reached. It is for Vertex and NHS England to enter negotiations. I urge Vertex to consider the latest offer from NHSE.

[Ian Austin]

I have heard from people in Dudley and across the country about the difference that those new treatments make, but patients have been waiting for three and a half years now. Some families are having to take extreme measures to secure access to the drugs. Will the Minister and the Secretary of State meet me, people with cystic fibrosis or their parents, and the Cystic Fibrosis Trust so that we can get the whole thing sorted out and the wait for the drugs is not drawn out any longer with another summer or year of impasse?

[Seema Kennedy]

I recognise and share the frustration of patients and their families. The situation has been going on for far too long. I again urge Vertex to accept the offer. The hon. Gentleman has been in touch about a meeting, and I understand that we have responded to say that we will give him a firm date shortly.

[James Frith]

Sufferers of CF, as we have heard, are well used to the new hope of changes in the Government, but it soon becomes yet another false dawn: they are left drowning in their disease without access to Orkambi. The Minister has to lean in on the business end of the job that she has to do. Will the Government use their leverage, support the buyers’ club—the drastic action that CF sufferers are having to take—and supplement access to the equivalent of Orkambi? That might finally get Vertex to the table to do a deal on this important issue.

[Seema Kennedy]

As I said to the hon. Gentleman and other hon. Members in the Westminster Hall debate on the drug, a deal is the preferred option. However, the attitude taken by Vertex, which has been called an outlier in this situation, means that my right hon. Friend the Health Secretary has instructed NHS England to look at other options.

[Mrs Sharon Hodgson (Washington and Sunderland West) (Lab)]

Over the past three years, all of us in this House have heard the numerous calls for Orkambi to be made available to cystic fibrosis patients. The Minister could go down in history if she takes the all-important step this week, while still in her job—I hope she will still be in the job tomorrow—of announcing an alternative route to access cystic fibrosis drugs, such as a Crown use licence or clinical trials. Today, before we break for recess, will she commit to that so that families can have Orkambi now?

[Seema Kennedy]

The National Institute for Health and Care Excellence process is important, because it is an independent expert review and the way in which we allocate resources sensibly. The Crown use licence is not a quick or easy solution, and it is open to legal challenge, which might delay things even more. Vertex has been offered the biggest settlement in NHS history, and I urge the company to accept it. However—I have said this on numerous occasions from this Dispatch Box and in Westminster Hall—the Secretary of State has urged and asked NHS England to look at other options, such as the ones to which the shadow Minister has referred.

[Kirstene Hair (Angus) (Con)]

5. What assessment he has made of trends in staffing levels of registered (a) doctors and (b) nurses since 2010.

--- Later in debate ---

[Gordon Henderson (Sittingbourne and Sheppey) (Con)]

16. What steps he is taking to reduce the number of missed GP appointments.

[The Parliamentary Under-Secretary of State for Health and Social Care (Seema Kennedy)]

Missed appointments are a waste of NHS resources, and we believe that encouraging patients to use the NHS sensibly and responsibly is the right approach. We are encouraging a range of local schemes to help to reduce missed appointments, with clinical commissioning groups and practices embracing technology and adopting a variety of approaches, such as text reminders, patient-recorded bookings and the increased use of online systems that make it quick and easy for patients to change and cancel appointments.

[Gordon Henderson]

A GP surgery in my constituency has reported that in one month this year, 78 people failed to keep their appointment and failed to cancel it. Those failures led to the surgery losing 11 hours’ working time. The surgery has announced that it will consider removing patients from its register if they miss three consecutive appointments. Does my hon. Friend support that proposal, and does she think that the policy should be rolled out across other surgeries?

[Seema Kennedy]

Local NHS organisations know their populations best, and that is why the Government support locally led initiatives to reduce missed appointments. The evidence shows us that people are less likely to miss an appointment if they have a convenient option. Swale CCG has a “Did Not Attend” campaign, which will run across the region this summer and support his constituents in making sure that they use their appointments responsibly.

[Mr Gregory Campbell (East Londonderry) (DUP)]

Is the Minister aware of any research that has been done, not just on missed appointments, but on repeat offenders who periodically miss their appointments, and the effect that has? What can be done to ensure that that is not repeated beyond today?

[Seema Kennedy]

There is no overall estimate of the number of people who miss their appointments. We want to encourage people to be responsible, but we also want to make booking appointments as easy as possible by having things such as online and text booking. NHS England will shortly conduct an access review, which will look at ways of developing a coherent offer to patients in terms of how they access their practice appointments. We will therefore make things easier, and hopefully bring down the number of people who miss an appointment.

--- Later in debate ---

[Tracy Brabin (Batley and Spen) (Lab/Co-op)]

T3. My constituent Catherine is undergoing post-operative breast cancer treatment. A new drug, Pertuzumab, which has been approved by the National Institute for Health and Care Excellence, has been shown to improve a woman’s life chances. The drug was prescribed for Catherine by her oncologist at the Mid Yorkshire Hospitals NHS Trust, but that was overruled by NHS England, although in the neighbouring trust patients are allowed it. Can the Minister guarantee that women who could extend their lives by taking this drug have access to it, no matter where they live?

[The Parliamentary Under-Secretary of State for Health and Social Care (Seema Kennedy)]

When drugs have been approved by NICE, there is an obligation to prescribe them. If the hon. Lady will write to me, I shall be able to look into this matter more closely.

[Paul Masterton (East Renfrewshire) (Con)]

I welcome the consultation on NHS pensions that was announced this week, and while I do not think that 50:50 is the ultimate solution, I welcome the invitation to present other proposals. However, given that this is causing an issue now, how quickly does the Department think that it will be able to turn the outcome of the consultation into action?

Advancing Our Health: Prevention in the 2020s

Seema Kennedy Excerpts

Tuesday 23rd July 2019 Written Statements

[The Parliamentary Under-Secretary of State for Health and Social Care (Seema Kennedy)]

Further to the prevention vision published on 5 November 2018, I wish to inform the House of the publication of the Green Paper, “Advancing our Health: Prevention in the 2020s”. The consultation will launch today and will run for 12 weeks.

For the first 70 years of the NHS, we have been successful in helping people live longer. Life expectancy has increased by almost 30 years over the past century. Cancer survival rates are up, mortality rates from heart disease and stroke are down.

Despite this progress, over 20% of our lives are spent in poor health. On average, men born today can expect to live 16 years in poor health and women 19 years. There is also a clear social gradient, with people in deprived areas living shorter lives in poorer health. Now we must move from thinking about life span to health span: the number of years we can expect to live healthy, independent lives.

The NHS is already making good progress, placing prevention at the heart of its long-term plan and supported by our record £20.5 billion additional investment. In the years ahead, the challenge is to deliver on these commitments, to move from a national treatment service, focused on illness, to a national wellness service, focused on good health, and to work even more closely with local authorities who have specific responsibilities around prevention and influence many of the determinants of good health.

As well as modernising prevention services, we also need to lay the foundations for good health across society and make healthy choices easier. This is because less than a quarter of our health is shaped by the services we receive.

Our health is our greatest asset. Just as we save for our retirement, we should be investing in our health throughout life. We know that some people find this easier than others, not because of innate differences in their values or beliefs, but because of differences in their experiences and circumstances. We believe that everybody has the right to a solid foundation on which to build their health. This means giving our children a good start and growing the conditions for good health throughout life.

When it comes to living a healthy life, the modern world presents many challenges. It can feel like the odds are stacked against us. This Green Paper is not about nannying but making healthier choices easier for people, so they are empowered to make decisions that are right for them and their families. To live a healthy, happier life, evidence suggests our focus should be on: eating a healthy diet, being physically active, being smoke-free and taking care of our mental health.

The commitments in the Green Paper help us towards our mission of healthy, happier lives. We aim to publish a Government response by Spring 2020, setting out our proposals in more detail.

Health is a shared responsibility. Only by working together can we achieve our vision of healthier, happier lives for everyone.

[HCWS1795]

Batten Disease

Seema Kennedy Excerpts

Monday 22nd July 2019 Commons Chamber

[Mr Jacob Rees-Mogg (North East Somerset) (Con)]

(Urgent Question): To ask the Secretary of State to intervene to ensure that funding is provided to treat those suffering from Batten disease.

[The Parliamentary Under-Secretary of State for Health and Social Care (Seema Kennedy)]

I thank my hon. Friend for his question; he is a great champion for his constituents. We must ensure that all children with Batten disease receive world-class care and support. The Secretary of State has met families of children who suffer from the condition and has seen at first hand how cruel the disease can be. I pay tribute to my constituent Melanie Moffatt, whose amazing care for her daughter Matilda has been truly inspiring.

The whole House will recognise that a key element of providing world-class care is getting access to the most effective new medicines. The National Institute for Health and Care Excellence is the expert body, independent of the Government, that provides authoritative, evidence-based guidance for the NHS on whether new drugs and treatments represent an effective use of resources. If they do, the NHS is obliged to provide funding. In 2013, NICE introduced its highly specialised technologies programme, which supports access to drugs for very rare diseases such as Batten disease, through additional funding—up to £300,000 per quality-adjusted life year. However, companies still need to price their products appropriately and fairly. In this instance, Brineura has not been made available at a price that could be recommended by the NHS. NHS England stands ready to do a deal at a reasonable price, but this has not been possible so far. I urge BioMarin to sit down again with NICE and NHS England, as NICE has not yet published its final guidance, so that a fair and reasonable price can be agreed.

I assure the House that my Department and the NHS are working as hard as possible to improve the broader care and support for patients with rare diseases, including Batten disease. I reassure all Members that the Department is committed to ensuring that all patients with rare diseases have access to world-class medicines, care and support.

[Mr Rees-Mogg]

I thank the Minister for her response. I am grateful that she has not hidden behind sub judice on this occasion. Could she confirm to me that, while NHS England is obliged to follow a positive recommendation from NICE, it has the legal discretion not to follow a negative recommendation and can decide to pay for a drug? In the event that NHS England will not do this, what powers—if any—does the Secretary of State have to ensure that a drug is made available? If that cannot be done, in what way is NHS England accountable to Parliament for the decisions it makes, or is it entirely above accountability?

The point at issue today is that Brineura has now been available for two years and it is available in many other countries at a price that has been agreed between their authorities and BioMarin. We now know that three more children—leaving five altogether in this country, including my constituent Max—who ought to be receiving this drug are not. They suffer from a condition that means that they degenerate relatively quickly, and this drug can stop the decline in their condition. It is therefore urgent that this matter is addressed quickly, rather than continuing to allow time to pass with sick children getting worse. It really is a most important and pressing issue. In instances where the drug companies and NHS England cannot agree, but where other countries have agreed, I wonder whether there could be any system of arbitration to determine what is a fair price, because the development of these drugs is exceptionally expensive.

[Seema Kennedy]

I thank my hon. Friend for his questions. I will attempt to answer all of them.

In terms of governance, no, NICE is not above accountability. Ministers set the framework for NICE, which is a non-departmental body. The reason it was established was to have fairness—so that there was no postcode lottery on access to various drugs. It is important that medical experts and scientists make these decisions rather than politicians. Regular governance meetings are held between the Department and NICE. There is a framework agreement. Where the Secretary of State considers that NICE is failing, or has failed, to discharge its functions or to do so properly, he can direct NICE to discharge functions. If NICE were to fail to comply with the Secretary of State’s direction in those circumstances, he could discharge such functions himself. There is therefore a strong and robust governance system with regard to NICE.

It is not always very helpful to use other jurisdictions as a comparison because we do not know the exact price that has been agreed. In addition, different systems have different healthcare populations and do not necessarily have the equivalent of our national health service.

Turning to access to Brineura, I pay tribute to my hon. Friend and to Max’s family. I know from the very moving testimony by him and by other hon. Members such as the hon. Member for Newcastle upon Tyne North (Catherine McKinnell) and from speaking to my constituent Melanie on numerous occasions that this is an absolutely dreadful disease. That is why we want the NICE process to be able to bring drugs to market as quickly as possible. Drug companies find this drug difficult to develop—that it is very expensive. It is not necessarily a drug that will be paid for by having millions of sufferers globally, and therefore a different system needs to be in place. That is why the bar for QALY is so much higher.

My hon. Friend’s suggestion on arbitration is very interesting, and I will take it away. On NHS England and the negative procedure, yes, in theory we could do that, but it is unlikely if NICE does not recommend a process. Overall, where a drugs company and NICE are unable to come to an agreement—we see this with other medication as well—Ministers urge the company to carry on negotiating to have a fair price, because every pound spent on one drug is a pound that we cannot spend on a drug for another sick person.

[Mrs Sharon Hodgson (Washington and Sunderland West) (Lab)]

Thank you, Mr Speaker, for granting this urgent question. I thank and congratulate the hon. Member for North East Somerset (Mr Rees-Mogg) for securing it following his Adjournment debate last week. I do not doubt that he would have preferred the Minister to have come before the House voluntarily, rather than being forced to come here today for his urgent question.

Time and again, we come to this place to talk about a drug and its benefits to patients, only to be told that no matter how good it is, people cannot access it on the NHS. Among all the politics, there are people, including children like Max, who are suffering. No parent wants to hear a critical diagnosis for their child who has not yet really experienced childhood, let alone reached adulthood.

As we have heard, Brineura, a drug made available by BioMarin, could stop the progression of Batten disease. An assessment by NICE has found that Brineura could provide 30 extra years of good-quality life to patients. But, as has become expected when we discuss drugs for rare diseases in this place, Brineura is not available for patients on the NHS. NICE confirmed earlier this year that it was unable to recommend the use of Brineura on the NHS because of cost-effectiveness. The drug costs over £500,000 per person for each year’s treatment. BioMarin has another drug for rare diseases—Kuvan, for patients with phenylketonuria, or PKU. PKU patients do not have access to Kuvan, because it is also deemed not to be cost-effective. Does the Minister agree that the NICE appraisal process is just not fit for purpose when it comes to assessing the suitability of drugs and treatments for rare diseases?

Access to Brineura would help to give patients and families their child back, and it would allow them to enjoy time with their child and treasure special moments with them. As time ticks on without access to the drug, parents will witness their child’s condition deteriorate. No parent wants to see that, so we really need an appraisal process that captures rare diseases effectively.

Will the Minister step in and personally urge BioMarin, NHS England and NICE to meet and come to an agreement? Families do not want just warm words from the Minister; they want and need access to medicines now. I hope that this urgent question will result in real change in how we address rare diseases.

[Seema Kennedy]

In answer to my hon. Friend the Member for North East Somerset (Mr Rees-Mogg), I urged BioMarin to get back around the table with NHSE and NICE and come to a fair and reasonable price. NICE has already approved drugs for 75% of rare diseases through its technology appraisal programme, including drugs for idiopathic pulmonary fibrosis and neuroblastoma. NICE’s process and review methods are constantly reviewed, and they are internationally respected. NICE knows that it has to keep up to date with developments in science, medicine and healthcare. There is a periodic review going on at the moment, and that includes extensive engagement with stakeholders.

[Andrew Griffiths (Burton) (Con)]

I thank the Minister for coming today and providing more information. On Friday, I met the parents of Michal, one of my constituents. Michal is four years old, and he was diagnosed with Batten in February. He has already lost almost all his ability to walk and speak, and his parents are desperate to get him access to this drug.

I understand what the Minister says about it not always being helpful to compare access to drugs in different countries, but this drug is available in 20 countries, including Wales. If Michal lived in Bangor rather than Burton, he would be getting the drug that could stop the progression of this disease now. It is simply not acceptable to say, “Let’s not compare what happens here with what happens in other parts of this country, the United Kingdom,” and we need to know more about that.

The Minister talks about her desire to get BioMarin around the table. Time is of the essence for these children —every single day matters when it comes to stopping this disease in its tracks—so will she agree to pick up the phone to BioMarin and personally ask it to come around the table to negotiate with NICE? If Wales can afford to give children this drug, the Minister must have an idea about the scale of the difference between what we can afford to pay in England, and what Wales is paying. We have to find a solution to make this drug available to parents and children here in England.

[Seema Kennedy]

I pay tribute to my hon. Friend and to the parents of Michal. This dreadful disease is so upsetting, not only for the children affected and their families, but for their wider communities. Health care in Wales is devolved. I again urge BioMarin to get back round the table, but I reassure my hon. Friend that I will make contact with the chief executive of NHS England to make sure that he is taking forward negotiations with BioMarin—he is the negotiating party—and I will let my hon. Friend know when I have done so.

[Catherine McKinnell (Newcastle upon Tyne North) (Lab)]

Thank you, Mr Speaker, for granting this urgent question. I thank the hon. Member for North East Somerset (Mr Rees-Mogg) for securing it. The families of children with Batten disease have been left dangling for far too long, and the delay in a positive decision being arrived at—for what is a really obvious use of NHS funding, if we were to ask any taxpayer out there —is just too painful for many of them to bear. The stress and anxiety they are being caused is completely unacceptable.

The Minister acknowledges that this is a dreadful disease, but it is a dreadful disease that has a treatment—a highly effective treatment. It does not just score 30 QALYs; it has been acknowledged that it scores way beyond that. NHS England is adhering to an arbitrary cap set by NICE. Will the Minister please confirm whether NHS England can use a budget exemption in these circumstances to deal with the very tiny number of children who are affected, and what will she do practically—and what has she done since last week—not just to urge but to get BioMarin round the table with NHS England and NICE to get a positive outcome for these families and these children?

[Seema Kennedy]

I thank the hon. Lady for her question. She has spoken to me and spoken in this House about Nicole and Jessica Rich. I agree that it is a highly effective treatment, but NICE sets the guidelines because it is made up of the independent experts and they are the ones responsible for the number of QALYs. However, as I have already said, it is constantly reviewing its guidelines in the light of the best available evidence. I have already reassured the House that I will make sure that I make contact with NHS England so that it is driving forward the process with BioMarin.

[Dr Caroline Johnson (Sleaford and North Hykeham) (Con)]

I have looked after a number of children with Batten disease in my career, and no one should underestimate the horrific nature of this condition with which a child develops apparently normally and then gets the horrific diagnosis that they will suffer neurodegeneration. I completely respect the importance of NICE being independent, and in general I do not get involved in these debates, but I believe I should do so in this one, because I actually think that NICE has this wrong. This drug does not make a little bit of difference—it does not have the effect of making someone die a couple of weeks later; it makes a phenomenal difference to the quality of life for these children. Yes, the trials have been short so far, but over a reasonable period it makes a massive difference, and I think we should do everything we can. I have heard the Minister say that she will ask the chief executive of NHS England to get BioMarin back round the table. How long will she give him to achieve that, and if he does not succeed, what will she herself do to ensure that these children get these drugs as soon as possible?

[Seema Kennedy]

I pay tribute to my hon. Friend for all the work she has done as a clinician. I can only say again—I know this is very disappointing for the House—that we have to rely on the NICE process to be independent. I hear what the House is saying about some people having doubts about the process, but, again, it is under review. NICE is internationally respected, and it has been going for 20 years. Yes, these are exceptionally difficult cases, but this is why, as custodians of NHS funds, we have to be very careful, because every pound we spend on one drug is a pound we cannot spend on another. I hear what my hon. Friend says about this being a life-changing drug, and I hope that BioMarin, NHSE and NICE will, and we would urge them to, carry on with their negotiations.

[Chris Bryant (Rhondda) (Lab)]

There can be very few things as painful for a parent as knowing, once their child has been diagnosed, that there is potential treatment out there that may make a radical difference to their life, and it feels as though some bureaucrats—whether or not they are medical bureaucrats—are saying no. These little things in my hand, which would not have been prescribed for me if I had gone to the doctor a year ago, now cost £7,000 a month to the NHS, and I am delighted that I am able to receive them. However, I do want to make sure we have a proper system to ensure, for the most rare conditions, that there really is a possibility of making things available.

There may be only three dozen cases in the UK at the moment, which means there are probably about 900 in Europe, and if we include the Commonwealth, probably several thousand more. Why do we not have Governments in the world sitting round the table together with people from the pharmaceutical companies, who are not the baddies in this—these are the people, I think including the hon. Member for North East Somerset (Mr Rees-Mogg), whose investment made these pills available for me, in part; investment in these pharmaceutical companies is a good thing—to make sure that more of these rare—disease conditions can be treated?

[Seema Kennedy]

We are determined to improve treatments for people living with rare diseases. As the hon. Gentleman pointed out, they have to be treated differently because fewer people are affected by them. We have the rare diseases strategy, and we are trying to use genomics better to diagnose and treat diseases. We are trying to be the first health service to put genomics into day-to-day health delivery, which will enable us to diagnose and treat diseases such as Batten more quickly. We have care co-ordinators for patients with rare diseases and we are trying to ensure that those who live to adulthood are cared for better, but what the hon. Gentleman said about having an international approach is valid.

[Mike Wood (Dudley South) (Con)]

The Minister rightly speaks about NICE’s important role in eliminating postcode lotteries. Does she agree that NICE’s independence is vital to ensuring availability to patients once an agreement is reached with BioMarin, wherever those patients are from, whether Penwortham in her constituency or Pensnett in mine?

[Seema Kennedy]

I could not have put it better myself.

[David Hanson (Delyn) (Lab)]

My hon. Friend the Member for Rhondda (Chris Bryant) made the point about international co-operation, which already exists. A European agency examining the treatment of rare diseases was established in January. It is funded by €101 million and the UK is currently a participant. My question for the Minister is, will we still be, in the event of withdrawal after 31 October?

[Seema Kennedy]

There will be co-operation with other medicines agencies, and I have no doubt that future co-operation will also come under any agreement that we reach with our European partners following our withdrawal from the European Union.

[John Howell (Henley) (Con)]

Sadly, this is not the first time that we have been here discussing how to make a highly specialised drug available for people generally and the talks with companies. May I add my request to my hon. Friend to act urgently to ensure that the review of NICE is undertaken with speed and that the full range of appropriate stakeholders is included in the discussions to take NICE forward?

[Seema Kennedy]

I completely agree with my hon. Friend. I have answered debates here and in Westminster Hall about the medical treatments for rare diseases. To reassure both patients and their families and Members of this place, we need to ensure that the review of NICE processes is robust and transparent.

[Jim Shannon (Strangford) (DUP)]

Less than half of all available rare disease treatments licensed by the European Medicines Agency are reimbursed in the UK for patients to access freely through the NHS, compared with 93% in Germany and 81% in France. With respect, Minister, the parents of those young children with Batten disease have seen those figures as well. They are desperate for the medication for their loved ones, so will she agree to an urgent review of the funding for such treatments for UK citizens?

[Seema Kennedy]

We are putting record amounts of funding into the NHS, but I would rest again on the independence of the NICE process and the fact that it is experts and clinicians who are making these decisions. I agree that these are dreadful decisions and it is very hard for us to make them, which is why we rely on that expert advice. I would say to the hon. Gentleman that other jurisdictions are not always a good comparison.

[Ms Marie Rimmer (St Helens South and Whiston) (Lab)]

I thank the hon. Member for North East Somerset (Mr Rees-Mogg) for securing this urgent question.

Will the Minister, while working to secure the funding of the drug Brineura to help sufferers of Batten disease such as my young constituent Kaycee Bradshaw, look at how we can help to prevent companies such as BioMarin from charging extortionate fees for life-changing drugs? Sadly, this company also charges beyond the NICE framework for Kuvan, a vital drug needed by my young constituent Liam, who suffers from PKU. BioMarin made a net-product revenue increase for 2018 of $31.3 million from Brineura and $26.1 million from Kuvan, and $1.5 billion from across its range of drugs. This, by my standards, is a clear example of playing profits with people’s lives. It hurts even more that it is children who are suffering. It is not on. It is time that Governments got together and took heed. We do not know what other countries are paying. It might be less than our £300,000 or it might not, but something must happen. Get together and put the pressure on, but please, please secure these drugs for our children.

[Seema Kennedy]

I pay tribute to Kaycee and Liam. The hon. Lady makes a very important point. We want pharmaceutical companies to develop their medicines here, so that they are brought to the market here first and our constituents have access to them. However, we also have an obligation to spend taxpayers’ money in a very fair way, so that every penny we spend is spent correctly and appropriately. When it comes to PKU, Orkambi or Brineura, what we are all—NHS England and all of us here—saying to the drug companies is that we will pay a price, but we want it to be a fair price.

[Nick Thomas-Symonds (Torfaen) (Lab)]

Earlier in this Parliament, I supported a young constituent of mine in securing access to Brineura. Health is a devolved matter in Wales, but the NICE recommendations are still very important. The problem I have seen over the past four years, unfortunately, is that those guidelines do not work particularly well when a disease is extremely rare. Does the Minister plan to look again and review the guidelines, so that people are not penalised simply because the condition they have is rare?

[Seema Kennedy]

Right hon. and hon. Members have made clear to me their concerns about the NICE process for rare diseases. A review is ongoing, and I will keep a very close eye on it.

[Mr Speaker]

I am very grateful to the hon. Member for North East Somerset (Mr Rees-Mogg) and to the Minister. I have a sense that we will very likely be returning to this matter in September, if not before.

Community Pharmacy Contractual Framework

Seema Kennedy Excerpts

Monday 22nd July 2019 Written Statements

[The Parliamentary Under-Secretary of State for Health and Social Care (Seema Kennedy)]

I am delighted to be able to announce a landmark five-year settlement for the Community Pharmacy Contractual Framework. This deal will transform the role of community pharmacy and embed them as the first port of call for minor illness and health advice in England.

Every day, in England there are around 1.6 million visits to community pharmacies. No appointment is necessary, and a person does not need to be registered with a pharmacy to benefit from their support or advice. The potential for community pharmacies to play a greater role across a wide range of health priorities is evident.

Over the last few months we have worked with the Pharmaceutical Services Negotiating Committee (PSNC) to develop a future vison for community pharmacy and expand their role across three key areas: prevention, urgent care and medicines safety.

We have agreed a settlement that will now translate this vision into practice and begin to transform the role of community pharmacy. It will see community pharmacies better utilised and integrated within the primary medical and community services we are working to deliver.

This agreement will come into effect from October 2019 and will mark the start of a series of developments that will continue over the course of the settlement period, through to 2024.

We will continue to work with the PSNC, and NHS England and improvement to further deliver this programme of work in partnership.

[HCWS1777]

Non-invasive Precision Cancer Therapies

Seema Kennedy Excerpts

Thursday 18th July 2019 Commons Chamber

[The Parliamentary Under-Secretary of State for Health and Social Care (Seema Kennedy)]

I want to begin by thanking the hon. Member for Easington (Grahame Morris) for introducing the debate and all Members who have spoken today, particularly the hon. Member for Blackburn (Kate Hollern), who spoke movingly about her late partner, John. His example lives on through his two beautiful daughters—my beautiful cousins—who, too, have dedicated their lives to public service. I am happy to reassure all Members that I am very happy to meet the all-party group—fingers crossed—and if I fail to address any of the points made today, I will try to address them at that meeting.

Cancer is a priority for this Government, and we have got survival rates up over the last 10 years, but there is a lot more to do. In the long-term plan, we state our aim to have 55,000 more people surviving cancer for five years by 2028. Four in 10 NHS cancer patients are treated with radiotherapy, so clearly radiotherapy is a really important part of the mix. I did not know about that until I met members of the APPG. I want to thank them for the manifesto that they presented to me, which I have read with interest and am happy to respond to.

NHS England announced a £130 million fund, which the hon. Member for Easington mentioned, to start a programme of modernising LINACs and giving patients access to leading-edge technology, regardless of geography. I will come on to the specific point raised by the hon. Member for Westmorland and Lonsdale (Tim Farron), because we share Rosemere as a cancer centre.

Since 2016, we have seen more than 80 machines either upgraded or replaced, with the aim of giving cancer patients access to the latest technology, regardless of where they live. The long-term plan specifically promises

“Faster, smarter and effective radiotherapy”,

with an aim of providing curative treatment, with fewer side effects and shorter waiting times.

Members mentioned the facilities at the Christie Hospital. Some of my constituents go there as well. The good thing is that previously some people had to leave the country, but at least now people are able to be treated in this country. The first treatment was last December. Work continues on the University College London Hospitals proton beam therapy centre, which we hope will be opened next year.

[Chris Bryant]

I commend the Minister for everything she has said, but it is slightly easier to put new kit in and build new buildings than it is to develop new staff. The biggest difficulty is with the number of radiologists and the whole staffing element. I wonder whether she could co-operate with colleagues in Wales, because this is a UK-wide issue.

--- Later in debate ---

[Seema Kennedy]

I will come on to talk about workforce, and I will also talk to my officials about meeting my counterparts in the devolved Assemblies, because that keeps coming up. I cannot say anything from the Dispatch Box because I do not know the protocol on that.

Fifteen million pounds has been committed to evaluate treating patients with SABR. There are 25 providers, and it is to treat early non-small cell lung cancer. I know that there are problems with lung cancer treatment. There are only 25 centres at the moment while there is assessment of emerging clinical evidence. NHS England is investing a further £6 million to support the great work that Cancer Research UK is doing on SABR clinical trials. This is regularly reviewed by NHS England’s national specialised commissioning team and was last reviewed during 2016-17. It is expected that access will be reviewed again over the course of 2019-20 to 2020-21.

Several Members talked about the tariff. Radiotherapy services are funded through national prices, linked in the main to the number of radiotherapy fractions delivered. Any change to the income that trusts receive for radiotherapy would therefore require a change to the national tariff. We must continue to ensure that NHS payment mechanisms support the delivery of the most effective treatments. That is why the long-term plan set out NHS England’s commitment to review the national tariff, in particular to ensure that appropriate incentives are in place to encourage providers to deliver the modern techniques that we all need—the ones of today and tomorrow—and that work commenced this year.

The long-term plan also sets out NHS England’s intention to use its capital settlement, which will be negotiated in the upcoming spending review, in part to continue to replace radiotherapy equipment. I will not pre-empt those negotiations, but I think that shows a clear and ongoing financial commitment to modernising NHS radiotherapy.

We have published specifications for operational delivery networks for adult external beam radiotherapy services. That is about the 11 radiotherapy networks, and I have spoken to the hon. Member for Easington specifically about satellite services. The point is that decisions on cancer services need to be taken locally. The networks have been established—the cancer alliances—so I urge all hon. Members to encourage their local services to engage in those, because that is really what we need.

With regard to the workforce, which is mentioned in every debate on cancer, the interim people plan was published recently. The noble Baroness Harding has met the all-parliamentary party group on cancer and is fully apprised of what it is saying. The final people plan will be published later this year.

I will draw my remarks to a conclusion, because I want to leave the hon. Member for Easington enough time to sum up the debate. This has been an excellent debate. I thank the hon. Gentleman for all the work he does with Members across the House. There has been progress, but I know that there is more to do. I am happy to meet the APPG to discuss this further. We need to do more to increase cancer survival rates. We have a very ambitious target. I am happy to work with him and with all hon. Members to ensure that radiotherapy is a vital part of the battle against cancer.

Public Health Funding: Enfield

Seema Kennedy Excerpts

Tuesday 16th July 2019 Westminster Hall

[The Parliamentary Under-Secretary of State for Health and Social Care (Seema Kennedy)]

It is a pleasure to serve under your chairmanship, Mr Betts. I thank the right hon. Member for Enfield North (Joan Ryan) for raising this issue. She is a great champion for her constituency, as is the hon. Member for Enfield, Southgate (Bambos Charalambous) for his.

I reassure the right hon. Lady that the Government are fully committed to improving public health. We want to place prevention at the heart of our health and social care system, because that is the only way to make the NHS sustainable in the long term. That is challenging, as we all know. We need to tackle the root causes of poor health, not only the symptoms. The population of our country is growing. As both the right hon. Lady and the hon. Gentleman pointed out, growth in London boroughs is particularly acute and has been rapid over the six years since the formula was put in place, and we recognise the demand on the NHS, social care and other public services. My right hon. Friend the Secretary of State for Health and Social Care and the Prime Minister are aware of the great gaps in life expectancy in London boroughs and across the country. We also know that lots of diseases that people die from nowadays are preventable, which is why we want to put prevention at the heart of what we do. The Prime Minister’s ambition is to extend healthy life expectancy by five years by 2035 and to reduce the gap between the richest and the poorest. We have made great strides in many areas.

Childhood obesity is an international problem, but we are being ambitious on it, as well as on air quality and tobacco. All these measures have the potential to make a real difference to people’s health and wellbeing. We have reduced sugar in fizzy drinks by 11%, we have cut average calories per portion by 6% through the soft drinks levy, and by 2020 the NHS diabetes prevention programme will support 100,000 people at risk of diabetes across England each year. On screening, the right hon. Lady will be aware that Professor Sir Mike Richards is undertaking a screening review at the moment, so issues such as those she raises about bowel screening will be brought up. That review will report later in the year.

The Green Paper is coming up and I hope that that will take us even further. We need action across local government, central Government and the NHS. Of course, the over-50s group to which the right hon. Lady has referred is an important part of that, because only through everybody working together will we be able to tackle the determinants of health and be far more successful at improving and protecting health outcomes.

To move specifically to public health and where it sits now, we gave back to councils responsibility for public health in 2013. That was important. They recognise what is relevant for their communities and are uniquely placed to use the full range of their activity—levers such as planning, transport, housing and the local economy—to promote better health.

[Joan Ryan]

I realise that there is not a great deal of time today, but the Minister says that the funding given to Enfield Council is relevant to its needs. Is she saying that the funding that it has been given is adequate to cover the public health requirements in Enfield?

--- Later in debate ---

[Seema Kennedy]

I will move on to the specific issue of the funding formula, how it came into being and how it might change. Of course public health is a question of the investment that national Government put in and how local authorities spend it, but there is a lot of innovation. I applaud Enfield Council and all local authorities for what they have done, because different authorities have used it in different ways. They are adopting innovative approaches. They are renegotiating contracts that perhaps had been untouched for years before the 2013 transfer. I will address funding later in my remarks. Councils are adopting new service models that have the potential to reach communities that have often been left out by traditional service delivery models.

I recognise that in the last spending review, there were difficult decisions to be made to ensure the sustainability of public finances, but over the five-year period, £16 billion has been available to local government for use on public health, including £3 billion for the current financial year.

The right hon. Lady raised a very important issue about the distribution of funding for local authority public health activity. I recognise the pressures that she has referred to specifically in relation to Enfield. When responsibility for local health functions moved from the NHS to local government in 2013, funding for relevant services was transferred to individual local authorities. That was based on historical local spend for the NHS, and the process revealed huge variation across the country. The funding for Enfield is based on what the NHS had been spending there up until 2013.

The Government are now carefully considering how to allocate public health funding in a more needs-based way, rather than continuing to allocate funding based on NHS historical spend. We recognise that Enfield’s per capita funding breakdown is different from that of other London boroughs, but a per capita basis is not actually a meaningful way of comparing allocations or the best way of determining funding. That is precisely because it takes no account of different levels of need and it disregards significant variables that have a major influence on the need for public health interventions. An example is the age profile of a local authority’s population. We will look carefully during the next spending review at future funding arrangements and the best way to allocate funding to each local authority.

On the letters from the Enfield Borough Over 50s Forum, if the right hon. Lady would like to distil those messages into a letter to me, I will happily respond to her and she can make that response available to her constituents.

[Bambos Charalambous]

A future funding formula needs to take account of need. There should not be the current differentiation. Kensington and Chelsea receives £82 per person more in funding than Enfield. It cannot be right that two boroughs that are about 8 miles apart have such a variance in funding. Will a future funding formula take more account of local needs?

[Seema Kennedy]

As I have said, the Department is looking at the funding formula. The hon. Gentleman says that the boroughs are only 8 miles apart, but we know that in areas that are very close together, life expectancy and, importantly, the length of time a person lives in good health can vary hugely. That is why we need to look very carefully at all the factors before the new formula is created. That will be assessed in the next spending review in the light of all the available evidence.

I am committed to working closely with local government, and with other partners and colleagues, to build on the achievements of the last six years. We need to act on a local, national and global level to meet the public health needs of the present and to rise to the public health challenges of the future.

Question put and agreed to.

Drug Treatment Services

Seema Kennedy Excerpts

Tuesday 16th July 2019 Westminster Hall

[The Parliamentary Under-Secretary of State for Health and Social Care (Seema Kennedy)]

It is a pleasure to serve under your chairmanship, Mr Hollobone. I begin by sending my sympathies and those of the whole House to Chelsea’s family and friends. It is a reminder to us all of the seriousness of the subject we are discussing today. I also thank the hon. Member for Manchester, Withington (Jeff Smith) for securing this important debate.

Many of the hon. Members who have spoken are devoting their parliamentary lives to this issue, because they feel so strongly about it. They have raised questions that are a matter not only for me and my Department but for other ministerial colleagues, particularly those in the Home Office, and I will transmit the many challenges that have been set for me today to those colleagues.

We have made some progress in reducing drug dependency-related harms, but, as the hon. Gentleman pointed out, this is an ancient problem. We have made progress but we are not at all complacent, and events such as the death of a girl such as Chelsea remind us that there is much more to do. I have to work with other Government Departments, public health experts and local government to continue supporting people through recovery and to prevent them from ever taking up drugs in the first place.

We published a drugs strategy in July 2017 and it is being rolled out. We know about the serious health harms of drug use, including blood-borne viruses, overdose and death, which have been outlined in great detail by hon. Members. We know that the majority of people who need treatment for drug problems are also experiencing mental health issues. We know that drugs cost £10.7 billion a year in policing, healthcare and crime costs; it is estimated that drug-fuelled theft alone costs us £6 billion a year. There is both an economic case and a moral case for us all to act on this.

It is encouraging that drug use in England and Wales is lower now than it was a decade ago. In 2016-17, 8.5% of adults had used a drug in the past year, compared with 10.1% of adults in 2006-07. More adults are successfully leaving treatment than in 2009-10, and the average waiting time to access treatment is two days.

I will pick up on some of the points that hon. Members have made. On the drug-related death figures for Scotland, health is a devolved matter, but of course—[Interruption.] I am afraid I cannot hear what the hon. Member for Glasgow Central (Alison Thewliss) is saying.

[Alison Thewliss]

The Misuse of Drugs Act is not devolved.

[Seema Kennedy]

I will come on to that. However, health is a devolved matter. Any death is a tragedy, but the figures are really worrying. I understand that the Scottish Government have appointed Professor Catriona Matheson to head up a drug deaths taskforce, to look at the main causes of death and to examine how to save lives.

My hon. Friend the Member for Central Suffolk and North Ipswich (Dr Poulter) raised the question where responsibility for public health should sit. Clearly, he thinks its sitting with local authorities is not right, but that is a broader question of public health commissioning that I do not know if we can get into here. However, he has a wealth of experience in this, and I will take away some of the points that he raised.

[Julie Cooper]

Does the Minister agree that, while we can argue about who should be responsible, as long as public health is the responsibility of local authorities, cutting their budgets is irresponsible?

[Seema Kennedy]

I will come on to funding.

My hon. Friend the Member for Reigate (Crispin Blunt) takes great interest in this issue. He spoke about the legislative framework for drugs, which is a matter for the Home Office. As I said, I will talk to ministerial colleagues about that. The Government are putting together a formal response to the report on custody-community transitions, with input from many Departments, including the Department for Work and Pensions, the Ministry of Justice and the Home Office. I think we have until the end of the summer to issue that response.

Local authorities will want to increase the provision of naloxone to people who are not in treatment, perhaps through outreach workers, hostels or needle and syringe programmes. Public Health England is working alongside the National Police Chiefs’ Council and Her Majesty’s Prison and Probation Service and recently updated its advice and guidance on naloxone availability in prisons. The problem with drug testing kits is that not all of them are entirely accurate, which might give people false reassurance. More sophisticated testing has been available at some festivals in one pilot, but again this is a matter for the Home Office.

Hon. Members talked about the international evidence that drug consumption rooms can be effective at addressing public nuisance issues and health risks for users and for the wider public, but there is a risk that such facilities would be introduced at the expense of other more relevant, evidence-based drug services for local areas. There is currently no legal framework for the provision of drug consumption rooms, but we support a range of evidence-based approaches to reducing health-related harms. Again, we are committed to widening the availability of naloxone to prevent drug-related deaths. I acknowledge the strength of feeling on drug consumption rooms in the House.

[Crispin Blunt]

This is a narrow point, but I invite the Minister to talk about overdose prevention facilities, rather than drug consumption rooms. One can understand the difference that might make to their reception in local communities; they are about preventing death.

[Seema Kennedy]

I thank my right hon. Friend for that intervention.

[Alison Thewliss]

Will the Minister give way?

[Seema Kennedy]

Briefly, and then I must continue, because I want the hon. Member for Manchester, Withington to be able to make his concluding remarks.

[Alison Thewliss]

The Minister talks about there being no legal framework, but it is the job of the UK Government to provide that. If she wants any assistance, I have a 10-minute rule Bill still waiting to be heard that she could implement.

[Seema Kennedy]

As I say, that is a matter for the Home Office. I sense the hon. Lady’s frustration, but I am not responsible for that area. I have already said twice that I am happy to take that point away. Tabling business in the Chamber really is not my responsibility. I sense and am cognisant of the frustration in the House.

Under the 2017 drug strategy, we are involved in delivering actions across four themes: reducing demand to prevent drug use and its escalation; restricting supply; building recovery; and a new strand focused on global action, which is important. We need a partnership-based approach alongside the treatment system; other partners, such as the mental health and criminal justice systems, have key roles to play in securing the drug strategy’s aims.

I attend a cross-ministerial drug strategy board with Ministers from the Ministry of Housing, Communities and Local Government, the Home Office, the Ministry of Justice and representatives of Public Health England. Additionally, the Home Secretary has appointed Professor Dame Carol Black to lead a major review of drugs, looking at a range of issues, including the system of support and enforcement around drug misuse, to inform our thinking about tackling drug harms. Dame Carol will report later this summer.

I acknowledge the concerns about the funding of public health services, and that local authorities need to make difficult choices about how they spend their money to be able to continue providing effective drug treatment services. Local authorities will receive £3.1 billion in this financial year, ring-fenced exclusively for use on public health, including drug addiction. In addition, we are investing more than £16 billion for public health over the five years to the end of 2020. It is a condition of the public health grant that local authorities have regard to the need to improve the take-up and outcomes from drug and alcohol misuse treatment services. Public health funding is a matter for the next spending review, in which it will be looked at in the light of the best available evidence.

[Mr Sweeney]

Does the Minister accept that it is within the remit of the Department of Health and Social Care to consider the possibility of not only drug consumption rooms but expanding the scope, based on a heroin-assisted treatment facility, to provide safe prescribing clinics, which have far lower thresholds and which would provide greater access to safe drug use?

[Seema Kennedy]

I will have to respond to that in writing.

It is not possible for the treatment system to bear sole responsibility for responding to these challenges. Where necessary, the Government are prepared to act to ensure that our response enables us to reduce the harms caused by drugs. We are already acting on designating third-generation synthetic cannabinoids, such as Spice, as class B drugs under the Misuse of Drugs Act. In response to the increase in drug-related deaths, PHE has been working to better understand how to best protect people from dying of overdoses.

Although we have made strong progress in tackling the human and financial harms associated with drug misuse, we know that there is more still to do, and that there are emerging challenges that we need to tackle. We will approach these issues with the full range of partners who are essential to delivering the drugs strategy, enabling us to build on such achievements—without being complacent—and drive further progress.

NHS Dentists: Cumbria

Seema Kennedy Excerpts

Wednesday 3rd July 2019 Westminster Hall

[The Parliamentary Under-Secretary of State for Health and Social Care (Seema Kennedy)]

It is a pleasure to serve under your chairmanship, Sir David. I thank the hon. Member for Westmorland and Lonsdale (Tim Farron) for securing this debate. He raised some important issues about dentistry, some of which are national problems that I have been looking at since I came into this role about three months ago, and some of which are pertinent to both the urban and rural areas of Cumbria—I know that there are problems in the constituency of the hon. Member for Barrow and Furness (John Woodcock) relating to geography and economics. I will talk a bit about what we are doing nationally, but of course there are some distinct issues to do with the geography in Cumbria.

Cumbria has struggled to attract dentists. The hon. Member for Westmorland and Lonsdale has raised that issue, which I take very seriously, on many occasions. National access to NHS dentistry is high, but I know from my conversations with colleagues from across the House that there are notspots, and that in isolated areas it is very difficult to get to a dentist. We are taking steps to address that issue to ensure that everyone has access to an NHS dentist. It is NHS England’s responsibility to commission dentist services to meet the needs of local people, and it has been actively looking into dental access issues in Cumbria. Its regional team covers my constituency, so it is looking at Lancashire and south Cumbria together. It has urgent work in hand to explore and implement schemes to improve local access.

In south Cumbria, NHSE will be working to help practices that are under-delivering on their contracted levels of dental services. If despite that support a practice remains unable to deliver its full contracted level of dental activity, the unused funds will be diverted into other local practices. NHS England believes that that could support care for about 3,000 patients. Alongside that, work is being taken forward across Lancashire and south Cumbria to integrate dental services within primary care networks. It is important that dentists are part of the integrated primary care network team, enabling oral health advice and prevention work to be offered across the primary care network. Oral health needs, including gaps in services and access difficulties, must be part of the wider health picture. The hon. Gentleman touched on that when he talked about access to GPs.

That is the local action. I want to touch on what we are doing nationally.

[Tim Farron]

The Minister made a very interesting point about people who under-deliver on their contract. It is important that we do not misunderstand what that means. A dental surgery can be working flat out, but if it is, for example, spending more of its time doing preventive work or reacting to people who want consultations and so on, it gets only one unit of dental activity for that. It could be absolutely full to the brim but be doing the lower-tier work just because that is how it is, reactively. That dental surgery is not failing or not working hard enough. It is doing the preventive stuff that we want it to do more of, but the UDA system, with its perverse incentives, does not reward that.

[Seema Kennedy]

The hon. Gentleman anticipates my speech: I will talk about contract reform later. He knows much better than me that the problem with the previous contract was that it was introduced with perhaps a bit too much haste, and we are now living with the consequences. We are mindful that we need a contract that works well and is sustainable for the future.

Nationally, we are introducing so-called flexible commissioning, which allows local NHS commissioners to commission a wider range of services from dental practices. That is expected to make NHS dentistry more attractive to new performers. Another key recruitment and retention challenge—of course, this is not confined to dentists; it applies to a whole range of healthcare and other professionals—is the growing demand among younger dentists for more varied portfolio careers. NHSE is working closely with Health Education England and a wide range of stakeholders to make portfolio careers a reality for dental professionals, allowing dentists to move between specialities such as prevention, restorative work, oral health and special care dentistry.

We want UK-trained dentists in the NHS, and we want them to stay in those careers, but dentists from overseas also play an important part in delivering NHS care. I am pleased that the NHS and the Government have taken steps through the launch of the EU settlement scheme to maintain that essential supply of dedicated and skilled workers, including European economic area-trained dentists, when we leave the EU. Last summer, doctors and nurses were removed from the tier 2 cap, leaving more places for other highly skilled professionals, including dentists.

The interim NHS people plan, which was published early last month, commits to creating a capable and motivated multidisciplinary dental workforce of a sufficient size to meet population health needs. The full people plan will be published later this year.

We are working closely with NHSE to reform the current dental contract. Feedback from dentists who are testing the prototype contract suggests it is a more satisfying way of delivering care. It supports a better skills mix, allowing dental care to be supported by a wider range of staff, such as therapists and hygienists. At a meeting a couple of weeks ago with a wide range of dental stakeholders, I announced that a further 28 dental practices had joined the programme, bringing to 102 the number of practices that are testing the new prevention-focused way of delivering care. NHSE is considering carefully when that approach can be rolled out more widely across the NHS. It is important that we get the new contract right, but I am hopeful that the roll-out will happen as soon as possible.

I want to touch briefly on three questions hon. Members asked. The first and most important was about children’s oral health. I heartily agree with the hon. Member for Westmorland and Lonsdale about the importance of children’s oral health and all the preventive measures the Department can take to protect children’s teeth. He rightly pointed out something that not all hon. Members are aware of: the biggest cause of emergency admission for children is poor oral health. Of course, that is entirely preventable. The Government are committed to that, particularly among deprived children. We have made the Starting Well approach available to other NHS England commissioners, and that is promoting increased access and early preventive care for very young children.

[John Woodcock]

That more than a third of children under five in Barrow have tooth decay is truly appalling. The Government need to make faster progress. I assume the Minister would vigorously oppose any attempt to weaken the sugar tax, which is designed to move people away from that harmful substance towards a healthier lifestyle.

[Seema Kennedy]

The hon. Gentleman makes a very timely intervention. We can see how successful the soft drinks industry levy has been in how it has helped to reformulate sugary drinks, the amount of money it has raised that has been recycled into school sports, and the fact that it is changing people’s tastes and behaviour. The prevention Green Paper is in train; let us hope that he is pleased with what is announced in it.

The hon. Member for Westmorland and Lonsdale mentioned emergency dentistry and I will have to write to him with specifics about the commissioning of services.

On the public health budget, I know from conversations with Members across the House that there are pressures on local government budgets. The ring-fenced public health budget will be a matter for the forthcoming spending review, when it will be assessed using all available evidence. The hon. Gentleman can be assured that I will take away all the evidence I gather from meetings with Members across the House and in my ministerial position to feed into the spending review process.

[Tim Farron]

Just so the Minister is fully aware of the facts—I know this predates her time in this role—the NHS talked in its long-term plan about its vision for early identification of conditions of all sorts, and about preventive care, and then literally a fortnight later, just before Christmas, the settlement for public health spending for Cumbria was reduced by £500,000. I would be grateful if the Minister intervened to ensure that that does not happen again, because it has a huge impact on our ability to keep children in good practice in their early years so they have good dental health.

[Seema Kennedy]

Of course, part of prevention comes from the public health budget. That now sits back with local authorities, which is where it was historically, and of course—the hon. Gentleman knows my constituency well, having grown up there—there are different needs in different areas. What the NHS does through the immunisation and screening programmes is also part of that aspect of preventive health, but I take on board his comments about the specific public health situation in south Cumbria.

I hope the hon. Gentleman is reassured that significant action is being taken locally in Cumbria and nationally, both now and for the future, to improve access to NHS dental services. The new prevention-focused dental contract in particular, which is a key part of our reforms, should attract people to and keep people in the dental profession, and make dentistry a more varied and rewarding career. It will ensure better access to dentistry in places such as Cumbria and across the country for all our constituents.

Question put and agreed to.

Genetic Haemochromatosis

Seema Kennedy Excerpts

Wednesday 3rd July 2019 Westminster Hall

[The Parliamentary Under-Secretary of State for Health and Social Care (Seema Kennedy)]

It is a pleasure to serve under your chairmanship, Mr Sharma. I know that I am pressed for time, so if I do not respond to all comments I will happily write to hon. Members. I thank my hon. Friend the Member for Rugby (Mark Pawsey) for securing this important debate on genetic haemochromatosis. I also thank his fellow members of the APPG and all right hon. and hon. Members who have spoken in the debate for highlighting the disease, which affects so many of us. The hon. Member for Heywood and Middleton (Liz McInnes) in particular, with her scientific knowledge, made a very good speech.

The Government are dedicated to improving the lives of all patients who live with rare diseases, as set out in the NHS long-term plan and the rare diseases strategy. Clearly, early diagnosis and treatment is key to prevent the development of the conditions that can arise from GH. I hope to be able to answer all the questions raised by my hon. Friend the Member for Rugby and others.

One part of diagnosis is genetic testing. That is a more recent development in haemochromatosis and is used to determine whether a mutation in the HFE gene is present, which can lead to iron overload. In January 2019 the NHS long-term plan set out the ambition to focus targeted investment in areas of innovation, including genomics. Last year NHS England launched its genomics medicines service, making the UK the first country in the world to integrate whole genome sequencing into routine clinical care. The GMS aims to provide consistent and equitable access to cutting-edge genomic testing to England’s population.

The first national genomic test directory, which underpins this service, was published in March 2019. It specifies which genomic tests are commissioned by the NHS in England, the technology by which they are available and the patients who will be eligible to access them. GH is included in the directory. To ensure that the directory remains at the cutting edge, it will be updated on an annual basis to keep pace with scientific and technological advances. We are developing a national genomic healthcare strategy, which is overseen by Baroness Blackwood, and that is happening alongside work with the Office for Life Sciences.

Hon. Members have referred to the UK National Screening Committee’s 2016 evidence about whether testing should be offered—as the hon. Member for Heywood and Middleton said, that raises massive ethical questions. That was because not all people with the faulty HFE gene—as somebody who is half-Irish, I am now concerned—will go on to develop the condition. At the time, no evidence was found that provided that committee with evidence that a screening programme would be effective. However, it is important to take account of new evidence and developments as they emerge. The screening committee is always keen to consider new research and will be looking at new evidence to screen for hereditary haemochromatosis in 2019-20. I assure the House that I will follow that with great interest.

GH is not currently part of the NHS health check, but Public Health England routinely publishes open calls for proposals for new content to include in the check, which they consider in view of evidence, cost, clinical effectiveness, feasibility of implementation and health equity. On NICE guidelines, the British Society for Haematology has already published guidelines on the management of GH. They were last updated in 2018. NHS England is the body with responsibility for commissioning new clinical guidelines from NICE. If anyone considers that guidance from NICE would add value, proposals for such guidelines can be made to NHSE.

The shadow Minister made some points about the public health budget and the Green Paper, which we have often discussed. They will of course be subject to best evidence in the spending review. My hon. Friend the Member for Rugby talked about patient blood meeting ongoing national needs for donated blood, red blood types and associated blood products. NHS Blood and Transplant has been working in close partnership with Haemochromatosis UK to engage with patients with GH and to inform them that they are able to have their blood removed through blood donation. During National Blood Week in June this year, articles and social media posts were used to inform patients about the procedure for donating blood at a blood donation centre. NHSBT is continuing its work to ensure that patients are informed about the life-saving gift that they can give.

Patients who want to donate blood instead of having venesections have to meet the criteria set out by NHS Blood and Transplant for all donors, and they are advised to have iron check-ups with their consultant. Patients who want to donate blood need to call the NHS Blood and Transplant national call centre to inform it of their condition. That will allow the haemochromatosis patient to donate blood at a donation centre more frequently than the rest of the population.

I thank all right hon. and hon. Members and the members of Haemochromatosis UK who have helped us to raise awareness of this condition, because there is a significant gap in our understanding. Hon. Members have rightly pointed out that this is the first time we have discussed GH in this House. I fully recognise the need to raise awareness about GH among healthcare professionals and to provide training. I reassure the House that the Government are committed to ensuring that those affected by rare diseases receive high-quality care.

Question put and agreed to.

Resolved,

That this House has considered genetic haemochromatosis.